Exploring Racial and Ethnic Differences in Parent-Reported Strengths in Children with Autism Spectrum Disorder.

BACKGROUND: Several studies have demonstrated racial/ethnic differences in parental concerns in children with autism spectrum disorder (ASD). However, no studies have investigated racial/ethnic differences in parent-reported strengths. The purpose of this study was to explore racial/ethnic differences in parent-reported strengths in children with ASD. DESIGN AND METHODS: This was a retrospective cross-sectional study investigating the relationship between parent-reported strengths and race/ethnicity at the time of an ASD diagnosis. Parent-reported strengths were qualitatively clustered into themes, and theme frequencies were quantitatively examined for relationships to race/ethnicity. RESULTS: Parents of Caucasian children reported a mean of 5.00 (SD = 2.17) total strengths compared to 3.75 (SD = 2.32) among Hispanic/Latinx children, 3.36 (SD = 1.43) among Asian/PI children, and 3.91 (SD = 2.05) among children from other races/ethnicities. Bivariate linear regression analyses indicated that Asian/PI, Hispanic, and other child race/ethnicity, compared to Caucasian child race/ethnicity, were associated with significantly fewer parent-reported total strengths. Asian/PI and Hispanic child race/ethnicity were associated with significantly fewer personality strengths, while maternal education was associated with a greater number of personality strengths. CONCLUSION: This study found racial and ethnic differences in parent-reported strengths in children with ASD. Further, higher levels of maternal education influenced total, personality, and behavioral strengths. Receipt of a greater number of child services was also associated with a greater number of behavioral strengths.

A Pediatrician's Guide to Working with Children on the Autism Spectrum in Coronavirus Disease 2019 and Beyond: Retrospect and Prospect.

The COVID-19 pandemic is an unprecedented event with devastating effects on children and families, highlighting and broadening disparities in the care of children with developmental disabilities, while simultaneously catalyzing innovation. Children are vulnerable to the impacts of COVID-19, resulting in increased stress, anxiety, isolation, and health challenges, further amplified in autistic children and children with other neurodevelopmental disabilities. These children are uniquely vulnerable due to communication impairments, comorbid medical disorders, reduced adaptability, and reliance on therapeutic interventions. Abrupt reduction in services and access to care during the pandemic compromised physical and mental health and led to missed intervention opportunities at critical times. It is important to examine the effects that the pandemic triggered, address deficiencies, and recognize new opportunities to improve systems of care to prepare for unforeseen futures.

Missed Opportunities and the Impact of the Pandemic.

CASE: Benjamin is a 9-month-old, former 36-week gestation infant who presented to the high-risk infant follow-up clinic with parental concern for developmental regression. His mother reported that Benjamin seemed to be developing typically, but over the past 2 months, he has lost the ability to visually track objects, is not as engaged with her as he once was, and now only rarely makes babbling sounds. His mother also reported episodes of intermittent "bursts" of stiffening of his extremities and brief staring spells. Benjamin's mother described him as a "good, quiet baby." She commented that he used to laugh and cry more frequently but has recently been "very peaceful and calm." Benjamin's mother recently relayed her concerns for developmental regression to his pediatrician during an audio-only telehealth visit. Benjamin was referred to a pediatric neurologist, and the consultation visit is pending.His mother is a 28-year-old single parent whose pregnancy was complicated by pre-eclampsia, gestational diabetes, and anxiety. Benjamin required admission to the neonatal intensive care unit because of initial feeding difficulties. After 1 week, Benjamin was discharged to home and was referred for early intervention services. Owing to the pandemic, there were delays with initiating intervention, but bimonthly virtual interaction with a representative from the infant development program was eventually provided.Benjamin's mother expressed significant concerns regarding the potential of exposing him to a pandemic-related illness because of bringing her son to in-person medical visits. In fact, because of her concerns, she attended only virtual well-child pediatric visits over the past 6 months. A thorough social history revealed that she is a former dance studio instructor. The studio closed and she lost her primary source of income because of the pandemic. As a result, she decided to not send Benjamin to child care and maintained isolation from extended family members.On physical examination, pertinent findings included poor truncal tone, lack of orientation toward sounds, and limited eye contact. The Bayley Scales of Infant and Toddler Development-Third Edition (Bayley-III) was administered, and the results indicated severe delays across all developmental areas, consistent with a diagnosis of global developmental delay.Benjamin's clinical presentation to the HRIF clinic and a history of developmental regression and intermittent body movements raised concerns for infantile spasms. He was transferred to the emergency department for evaluation and consideration for admission to the neurology service. An electroencephalogram confirmed epileptiform abnormalities consistent with infantile spasms, and he was immediately started on treatment.Impacts of the pandemic on the medical care of vulnerable/at-risk pediatric patients have included delayed receipt of early intervention services, parental fear regarding potential exposure to pandemic-related illness while seeking preventative care, increased use of virtual visit platforms for medical care and developmental intervention services, etc. What factors should be considered when providing support for these vulnerable/at-risk patients?

Navigating Medical Care for a Young Adult with Developmental Disability.

CASE: Sam is a 20-year-old young man with intermittent gastritis, autism spectrum disorder, and intellectual disability who was admitted to the hospital because of nutritional concerns. His parents have legal guardianship and report that he has had increasing frequency of refusal to eat, resulting in a 15-pound weight loss over the past 3 months. On admission, a multidisciplinary team including specialists in gastroenterology, nutrition, feeding (behavioral and mechanical), psychiatry, palliative care, and social work was engaged to develop an evaluation and care plan. Sam's nutritional assessment was significant for severe malnutrition. An upper endoscopy was performed and was without abnormalities, including signs of significant gastritis.An upper endoscopy was performed and was without abnormalities, including signs of significant gastritis.A carefully obtained history found that Sam does not have a primary care physician. He was recently hospitalized at another facility because of his weight loss and nutritional concerns but was discharged against medical advice because of parental dissatisfaction with his care. His mother shared that she has tried many strategies to encourage Sam to eat including pushing spoons of food into his mouth, syringe feeding, and verbally pleading with Sam to take a bite, but all of these have been without success.Because of concerns that persistent attempts to verbally and physically coerce Sam to eat may be contributing to his aversion to food/eating, the feeding team provided Sam's parents with education and coaching for utilization of behavioral cues to determine when Sam wanted to eat. Despite parents expressing their understanding of the importance of avoiding physical attempts to "make" Sam eat and the team palliative care physician meeting with Sam's parents to elicit their goals for Sam's care, his nurses reported observing several instances of Sam's mother tapping a loaded spoon on his lips. Because of minimal oral intake, a nasogastric tube was placed for provision of hydration and nutrition. Sam's parents consented to the use of soft restraints and the presence of a bedside patient care assistant because of Sam becoming agitated and pulling at the tube.After 10 days of hospitalization, Sam was taking about 50% of his goal intake by mouth. Unfortunately, Sam removed his NG tube, and his parents refused to allow the tube to be replaced. Sam's parents then discharged him against medical advice, stating that they believed he would recover better at home. What are important considerations in caring for patients like Sam in the hospital setting and beyond?

Parent-Reported Strengths in Children with Autism Spectrum Disorders at the Time of an Interdisciplinary Diagnostic Evaluation.

OBJECTIVE: Parents of children with autism spectrum disorders (ASD) often focus on concerns in discussions with health care providers. However, studying child strengths and positive parental attributions is an emerging area of focus and not often highlighted in many studies with children with ASD. The objective of this study was to identify parent-reported strengths in a sample of children with ASD. METHODS: This was a qualitative study of parent report of strengths in clinical notes with children between the ages 3 and 8 presenting for a team diagnostic evaluation and meeting the Diagnostic and Statistical Manual of Mental Disorders (DSM)-IV-Text Revision (TR) or DSM-V diagnostic criteria for ASD. The reported child's strengths were qualitatively analyzed, coded, and clustered into themes. RESULTS: Ninety-eight charts were reviewed. Five meta-themes of strengths were identified: Personality Characteristics, Social Personality, Cognitive Functioning, Behavioral Characteristics/Coping Mechanisms, and Skills. On average, parents reported more strengths in the Cognitive Functioning and Personality Characteristics meta-themes. CONCLUSION: Pediatricians have a unique opportunity to discuss parental positive perceptions of children with ASD and to learn about their strengths.

Aggression in Autism Spectrum Disorder: Supporting the Entire Family.

CASE: Juanita is a 13-year-old non-verbal Latina girl with autism spectrum disorder, moderate intellectual disability, and a seizure disorder whose aggressive behaviors toward her parents have significantly worsened over the past few months.Juanita's monolingual Spanish-speaking parents are here today for medication management at her primary care clinic. The parents report that Juanita pinches them, pulls their hair, and hits her head with her fists. Her aggression toward them is usually triggered by feelings of frustrations, leaving her parents feeling like they have to walk on eggshells around her and have led to differing parenting styles. Her father reports that he tries to avoid getting her upset and prefers to watch TV with her, whereas her mother takes on the day-to-day caretaking. Although he wants to take a more active role in parenting Juanita, when he tries, Juanita becomes more aggressive and reacts violently toward him.During the visit, Juanita keeps her eyes downcast, is withdrawn, and some strain is noted between her parents. While speaking to them, Juanita's mother chimes in and reports that she considers herself the primary caregiver and the one who knows her daughter the best. She often dismisses Juanita's father's reporting, saying that "he doesn't know what really is going on." When Juanita is taken to the restroom by her mother, her father tearfully reports that he feels that it may be best for everyone that he leaves the family because of Juanita's worsening aggression toward him and the toll it is taking on his marriage. How would you approach her management?